fatigue

[Annie122]

i could sleep the clock around anyone else get tired easily?

[Annie122]

thank you

[Hidden]

Lots of people on this site have difficulty sleeping. However, initially my OH slept for 12 hrs at a time. That was due to the inflammatory process no doubt. Now he has little inflammation, but the side effects of the drugs cause him to be shattered much of the time. Sometimes he goes to bed as late as 9pm, he's often in bed asleep for 8pm and today asleep at 7pm. As you might imagine our social life isn't a whirl currently, but some people will read this and be jealous.

[Shalf in reply to Hidden]

JEALOUS!

[Hidden in reply to Shalf]

If I could parcel up some sleep I would send it to you. I don't have any spare myself. OH will sleep 12hrs tonight. 6hrs would be ambitious for me. I know lots of people can't settle or wake frequently because of pain. Not good.

[Shalf in reply to Hidden]

Awe your a sweetheart Norisa. I know you would. Yip, I'm one of those people. Going to start gabapentin tomorrow. Was prescribed by Rheumy last month to help with Fibro pain in my legs! Terrible! And also sleep! We will see! Xx. P.s, least you've got company and friends here when OH asleep 😁 xxx

[Hidden in reply to Shalf]

Yes, you are my social life after 8pm so lets party!!! I've heard good reports re gabapentin for pain management so fingers crossed it helps you. Sleep is pretty important I reckon.

[Shalf in reply to Hidden]

Let's indeed! Have to be honest, this is the best place to be to be yourself! What a great load of people! Thanks for that Norisa, I was a bit apprehensive about this drug. I thought it was just for nerve pain? I'll try it anyway xx

[Hidden in reply to Shalf]

Definitely worth a go. Off to find my library book. Less tiring on the eyes than a screen.

[Shalf in reply to Hidden]

Aww, come back soon! X

[Zip1 in reply to Shalf]

Hi, I was prescribed pregabalin which is similar th gabapentin. It took a while to get the dosage right but now I get a good nights sleep! I hope it works for you.

[Shalf in reply to Zip1]

Zip, thanks for your message, it's encouraging. I really hope so too. Lack of sleep is not good. X

[Hidden in reply to Hidden]

Send some my way please

[Hidden in reply to Hidden]

I'll see what I can do!

[Simba1992 in reply to Shalf]

Hello Shaft,

I have noticed that you have a hard time sleeping. Something that may be worth trying is an antihistamine called Cyprohepatide. This has been called a wonder drug since it has been shown in research to have many benefits. No hard med and way better alternative than any sleeping med. And it really does help with sleep. Here is a link with research as well as discussion among those who have tried it. I have tried it to calm insect bites .

raypeatforum.com/community/...

[Shalf in reply to Simba1992]

Simba, thanks so much for this. Yes, I have had trouble sleeping for a while now yet I feel totally exhausted most of the time. You would think I would fall asleep on my feet but I don't. I am currently continuing a antihistamine called Desloratadine following a skin reaction to Oramorph. I will ask GP if I can change the antihistamine. The Cyproheptadine sounds very much what I need! Just starting Gabapentin for sleep and Fibro pain as recommended recently by Rheumy. It's all a tiring waiting game with all these drugs. Hope I can scream BINGO! shortly! Xx

[Simba1992 in reply to Shalf]

I really do believe Cypro would be something for you. Good luck and let us hear how it goes. xSimba

[petalnumber2 in reply to Simba1992]

Hi Simba,

I can confirm that antihistamine's help with sleep. Like many others here I find it difficult to get a good night's sleep. I am going through a bout of overwhelming fatigue at the moment, but try not to have naps during the day, even so having a good night's sleep seems out of reach. That is until I took an antihistamine before going to bed for itchy eyes and actually slept through the night for the first time in ages.

Yippee.........

[Simba1992 in reply to petalnumber2]

You should try cypro if you need sleep aid since it really has other health benefits as well😊👍🏻

[Mmrr]

Annie122, fatigue is an issue for most people with RA and for some, myself included, it is the biggest issue to deal with. Methotrexate has helped me a lot with sleeping better and feeling less tired, if you are well controlled the fatigue does become much more manageable. Your rheumatology department should be able to give advice in pacing yourself which does help. NRAS also has helpful advice on their website and leaflets you can download.

I read somewhere recently people with RA spend their days trying to stay awake and nights trying to get to sleep. How apt !

Many rheumatologist play down the fatigue element, but I don't let mine away with it, it is always on my list to report to her and discuss.

[Shalf in reply to Mmrr]

Days trying to stay awake and nights trying to get to sleep! OMG! You know me so well Mmrr! xxx

[Mmrr in reply to Shalf]

🤤😨

[Shalf in reply to Mmrr]

Haha 😁 true though!!

[Hidden]

I think that it is worse trying to sleep. I crawl out of bed some mornings

[Shalf in reply to Hidden]

Will let you know how gabapentin goes Minty. I said to Norisa I was prescribed a month ago... What I meant was, it was suggested by Rheumy and the process would be to GP! Yes a month is pretty good for NHS system to update!! Starting tomorrow so if I'm not here I'll be in land of nod should anyone wonder where I am 🤔🤔🤔

[4seasons]

Hi Annie122 , I understand how you feel , fatigue can feel more like exhaustion. I feel lazy but my body is in charge , when my eyelids close at anytime during the day there is nothing I can do just to go with it !

Hope you'll get your energy back soon Annie x

[Rooby-Dooby]

I don’t think I realised just how tired I am...! I sleep very well...every night...between 6-8 hours a night. I work 30 hours a week and am a busy mum to 2 children..my husband works shifts...! I have fallen asleep waiting at the traffic lights on my drive home from work...😳 I feel exhausted...and I’m having a flare up too...not sure whether to rest and take time off work (which makes me feel guilty and lazy) or carry on as usual as it keeps me awake..!? 😖

[Mmrr in reply to Rooby-Dooby]

It's a no brainer...take time off, listen to your body and rest.

You shouldn't be putting yourself or others in danger by driving when you are not fit to do do.

[Rooby-Dooby in reply to Mmrr]

I would never put my or others lives at risk...I have only felt my eyes closing at the traffic lights...perhaps I was exaggerating by saying I had fallen asleep.!!

According to my husband I have always been like this, even before I was diagnosed with RA...!! Which I think is true, except it feels different these days...maybe it’s age!! (I’m only 42 though, so dread to think what I’d be like in another few decades!!) 🤣

[Rubyroo1 in reply to Rooby-Dooby]

If you don't rest then you might end up taking more time off work, as you may make yourself worse, so take some time off and rest ! Taking time off doesn't make you lazy, in fact, you are probably doing them a favour, as you will get more work done for them when you're feeling better.

I understand the guilt thing too, it seems like most people on here are selfless, with this crappy disease we need to be a bit more selfish !

Most companies these days don't consider loyalty, if the tables were turned would they feel guilty piling more work on you for no more money ?!

[Mmrr in reply to Rubyroo1]

an old man I knew called it soulfish rather than selfish.

[petalnumber2 in reply to Rubyroo1]

Hi, I really do sympathise with you and everyone else who has RA or associated conditions, and are of working age and perhaps a husband and children to look after. It must be very difficult to be able to rest when you need to. I am told that the tiredness/fatigue that comes with our conditions is only helped by pacing ourselves and resting when need be. Certainly I am able to do this because I am retired and can go with the flow.

if you need to take time off to get yourself better, your employer will benefit in the end when you are giving 100 per cent.

Please don't feel guilty . It is not your fault that you have RA or other. Xxx

[Tillie20]

Hi Annie it is terrible some days I feel I cannot move during the day and my eyes close but I get up and do something to stop me sleeping but come 7pm my eyes just close fit about 10 mins and that is it for the night takes about 3hr hours to get to sleep when I go to bed and then keep waking up with my feet thank goodness it is not a flare as I would not sleep at all x

[Beladona3]

I'm newly diagnosed and the fatigue has actually been the worse aspect of RA as it seems my swelling and pain can be managed by medication but nothing seems to get rid of the fatigue. I've been giving in to it and resting/sleeping when I feel the need but I will have to re think this method when I go back to work . Good luck with managing your fatigue, the good news is it does seem to come and go and you can make the most of the periods when it's absent.

[Rubyroo1 in reply to Beladona3]

You do need to give in to it a little and rest. I know this disease is different for different people, I work full time and have mainly worked, through my first symptoms which started about a year ago - diagnosed in the summer, with the occasional day/s off sick.

I have to say I have only been on meds since August but do feel like I have more energy than I did, but not back to "normal" which apparently will come (fingers crossed), still in pain mind you, but trying to keep postitive. The NRAS has some great booklets on working both for yourself and your employers and RA in general. Hope you start to feel a little better soon.

[Beladona3 in reply to Rubyroo1]

Thanks I'm off my mtx at the moment due to a bout of shingles but I am hoping to be back on them next week and to start back to work after 4 months off since diagnosis in August....hopefully I'll be able to stay awake while I'm there ....sounds like you've done really well continuing to work so far....yes I have found the NRAS a godsend and have a few of their booklets which are hugely informative and helpful. Hoping you continue to improve.

[Rubyroo1 in reply to Beladona3]

oh no - not had shingles but its supposed to be horrid ! Take it easy when you get back to work. Getting there slowly but have a cold at the moment , I feel a few days off work coming up !

Hope you feel better soon too. x

[freesthomas]

Hi Annie. I understand completely. Doesn’t matter how much sleep I get, I never wake up feeling refreshed and ready to go. Always feel like I could sleep more! Quite a few of my meds cause drowsiness, so that probably doesn’t help either in terms of the fatigue.

[Bradclew]

Hi Annie, me too all I want to do is sleep I think it’s the medication I’m now on Benepaly and Leflunomide whilst cutting down on steroids Inwould love to be my energetic self but I’m told it will come in time

I want it yesterday this is a horrible desease it’s taken my normal life away from me there’s been times when I want to give up I can tell you

To crown it all I have a painful back for which I’ve decided to have acupuncture hoping for some relief anyway good luck hope this message tells you you are not alone xxJean

[Rubyroo1 in reply to Bradclew]

I liked and then unliked you comment, as it seemed wrong to "like" it as you are in pain and tired. I completely understand the "it’s taken my normal life away from me there’s been times when I want to give up I can tell you" statement !!! Hope the acupuncture works for you, I find that going to an osteopath helps me, that and the occasional massage helps, along with swimming when I have the energy and less painful wrists and knees !

[Rubyroo1]

Oh I haven't been sleeping well at all, especially the last couple of nights, it seems like I am too tired to sleep, it doesn't help having a cold at the moment either- planning to be in bed as soon as I get home from work today !

Normally, I do find that I am really tired at the weekends after a full week at work, I try not to give in to this bl**dy disease, but sometimes I just have to.

[NeonkittyUK]

I am not sure of how you are affected with your health (sorry if I've missed a previous post but I've not been on the forum so much these past few weeks) but I have found that becoming more active since my RA is under much better control helps me fall asleep when I have a busier day. The quiet days I am not out so much I struggle to nod off in bed at night and also my hormones may play a part post meno so that has an affect for we ladies too. Ugh. I have just bought a Boots Lavender pillow mist sleep spray and it's gentle and not potent and I think it has also helped. Also a regular bedtime. My OH always says we have to do that as it is of vital importance and he's right. I used to stay up a bit later reading to try make myself tired when the pain of RA was bad but understandable that you'd try distract yourself. I couldn't do that now as I've tired myself out too much to read at night! I do think though that a little pootle around outside, whether walking if you can or even out in the car .. Or doing a bit of light tidying in the garden etc for half an hour. Just being in fresh helps you to fall asleep easier. That is if you don't have to go to work every week day. When you are indoors at home during the day also you can nap and nod off easily and interfere with your night's sleep as that did it for me. However sometimes you feel so yuk you need that nap. You have to do what up have to do! Strong oral painkillers and inflammation out of control sent me to sleep all the time a few years ago and I could do 18 hours sleep no problem. Not good long term as your body clock is all out of synch. The bad old days. I do tend to wake better now the RA is under good control. Also I sleep better now I do two busy aqua sessions a week as I'm exercising and feeling fitter. It takes time to readjust once your body has had the rude awakening and interference of arthritis etc. Good Luck!

[Bradclew in reply to NeonkittyUK]

Hi everyone,I’ve just had my fifth jab of Benepaly and after each jab I feel really rough weak and exhausted for a day or two,

Has anyone had any experience of this reaction and any info of how long before I feel any benefit

I’m now 81 and this RA started a year ago through a virus contracted in Oz spending time with my children who live out there

My arms and hands are so painful and some of my fingers have lost feeling making it difficult to use my hands much

I’d appreciate some advice,between the pain and utter exhaustion sometimes I feel so depressed xxxjean

[Hidden in reply to Bradclew]

Jean, that’s rubbish, feel for you. My rheum said up to 12 weeks for benepali to have full effect; I know we’re all different with drugs but hope that’s a help. I did notice first few weeks my joints aches more after injection but this has subsided. Hope it improves

Keren x

[petalnumber2 in reply to NeonkittyUK]

Hello, I have just read your bit in the conversation and I think you are right about exercising. I usually go to the local shops on my scooter, but recently I decided to walk it and I felt so good when I got home. With me it is a mental thing which I need to overcome because some years ago, just after being diagnosed I walked around the village I was living in then and my legs, hips and feet just siezed up and I couldn't continue walking. A kind person went to get my OH who was wheelchair bound and he sat me on his lap to get me home. So, I consider that as long as I've got my mobile phone I will be able to call any one of my friends who will come to my aid.

So, I will go walking now as often as I can, once this bout of fatigue has past. Xxx

[Rooby-Dooby]

That’s what it is...waking up and not feeling refreshed...!!

I’ve been diagnosed almost 10 years...on meds that sort my pain and flare ups out most of the time...but feeling in-refreshed and tired wears you down...it takes a lot to keep motivated, including exercising...walking the dog is good, it keeps me motivated to get out!

[Hidden]

I think a lot depends on drugs you’re on , side effects & how well they’re controlling it too, bar flares & when you first go down with it when everyone feels like crap. I spent year on MTX & Hydroxychloroquine being knackered all day & yet only being able to sleep 3 hours at a time at night. I didn’t realise how much it was taking its toll on me as actually sleeping thru night (most of time) on benepali 😀 now. Hope yours improves soon x

[petalnumber2]

Hello Annie 122,

I know exactly how you are feeling right now.

Overwhelming Fatigue is what I like to refer to it because it best describes exactly how I feel, overwhelmingly exhausted. It just suddenly comes over me like someone has thrown a big blanket over my head. It is the most horrible sensation. Today I needed to go out and get a few bits of shopping, my washing basket is full and I couldn't do any of it !! I suppose, looking on the bright side at least it's not Christmas time. I would hate to miss out on all the family celebrations.

But, today I made myself a promise that I will try having massages, as I have recently followed the thread of conversation on here about how it can help. For a time I did go to Palarty ( not sure if this is the right spelling) ha ha ? but I found it too strenuous for me, but the lady who takes the classes is a physiotherapist and also does massaging. She is very knowledgeable about the human body, so I'll give it a go, what have I got to lose !!

Let's hope that you Annie and me and anyone else who is suffering overwhelming fatigue at the moment, get through this time and are well enough to enjoy Christmas.

Take care all who are suffering right now. But hugs xxxx

[Victoria-NRAS Partner Moderator NRAS]

Hi Annie

Fatigue is a huge issue for many people with RA and very commonly comes up on our helpline, and as you can see from the comments, you are certainly not alone! We produced a new booklet on fatigue earlier this year, which may be of interest:

nras.org.uk/publications/fa...

You may also find our leaflet on sleep helpful:

nras.org.uk/publications/sl...

Kind regards

Victoria

(NRAS)